[adenure]

in reply to: Is the Uptake Test Necessary? #1177115

Hi Jen,

I got Graves after my 4th baby was born. There was a question as to whether it was postpartum thyroiditis. I was also breastfeeding so I didn’t want to get the scan as I’d have to wean temporarily for 3 days. My endo. did antibody testing (which was positive) and he diagnosed me with “95% certainty” of having Graves. He started me on methimazole. Unfortunately, methimazole caused me liver issues, so I had to choose RAI or surgery (I opted for surgery).

Before taking such a big step like surgery, I got the uptake scan done to be 100% sure I had Graves (which I do). I weaned temporarily and did the scan. It wasn’t a big issue.

As far as what is used radioactively for a scan, the radioactive iodine is not the same that is used with RAI for ablation and destruction of tissue. The nuclear doctor explained it to me this way: Iodine-131 for ablation destroys tissue it comes into contact with. The uptake iodine (I-123 I believe) “bounces off” the tissue and does not destroy anything. There is an I-126 I believe mixed into the I-123 which is considered an impurity and has a long 1/2 life. But, the I-123 half life is very short (hence why I only had to wean for only 3 days). So, it is in and out of your system quickly. Because of my breastfeeding, the doctor made sure the dose I was getting was practically entirely I-123. Some doses have more of the impure I-126 and take longer to get out of the system. If you’re very concerned about it, you could do what I did and ask for a dose with very little impurity.

[adenure]

in reply to: 8 weeks post RAI – back hyper and not sleeping! #1177141

Just want to say hang in there. I had surgery instead of RAI, but I know how bad the insomnia is when we’re hyperthyroid. I had months and months of insomnia- 2-3 hours a night of sleep and waking up constantly. Not being able to get back to sleep. It sucks. No doubt. All I can say is that once your hormone levels get normalized, you will sleep again. For me, it was literally one night, all of a sudden I could sleep again. It’ll happen. I drank camomile tea (and still do) before bedtime to help with sleep. I tried Benadryl, but found that it made my heart rate go up, so that wasn’t too helpful. Each day you’re closer to being well again- hang in there.

[adenure]

in reply to: wife of graves disease #1176533

Eric’s Wife,

Once your insurance kicks in, is your husband willing to consider RAI or surgery? I have 4 little ones too (9 years old, 8 y.o., 5 y.o., and 15 months old) and I homeschool them. I know how incredibly impossible it is to care for your family when you’re hyperthyroid. It is a miserable existence. I was on methimazole, but due to adverse liver effects from it, I had to decide on surgery or RAI after 7 weeks on the meds. I chose surgery (that was 8 months ago) and am so very happy that I did. I am much healthier now than I was and am physically, mentally, and emotionally myself again. It is a scary decision, especially when everything makes us scared and anxious bc of the disease. But, it feels so good to be well again. It can happen. It might be something to consider.

[adenure]

in reply to: First lab results after 6 weeks on Levothyroxine #1177038

Hi Nate,

Glad to hear you’re on the path to being well again. It is a good feeling! When I was with Kaiser insurance, they did not even offer the free T3 test. They did the total T3 which includes the bound hormone. I too was curious to know what my levels were. When we switched insurances, I had the free T3 & free T4 along with TSH tested. My current doctor is in agreement with that. TSH isn’t the most accurate test as it can take time for it to catch up with what is happening with your free T3 & free T4 hormones.

My guess (and I’m not a doctor obviously) is that the 125 will probably get you in the right spot. I was started on 100 mcg of Synthroid and after 6 weeks had a TSH of around 6.35 or so while my free T4 was actually in the upper end of normal. I was with Kaiser then so I don’t know what my free T3 was. I was increased to 112 mcg. and 2 weeks later my TSH went down to .79 or so and my free T4 remained in the upper end of normal. I recently had the full panel done and my TSH is around 1.7 or so (different lab, so probably different calibrations) and my free T4 is at the upper end of normal. My free T3 was at the very low end of normal though (2.2 with a normal range of 2-4). My doctor was willing to let me try Cytomel with the Synthroid. But, it recreated some hyper symptoms, so I stopped taking it. The Synthroid at 112 mcg. is doing a good job, and I feel pretty good in general. So, I’m not going to mess with it for now.

So, is the free T3 necessary? Maybe if you’re still experiencing hypo symptoms even though the labs that are being run are considered in normal range. But, if you feel good and your labs are good, then the free T3 probably isn’t necessary.

[adenure]

in reply to: wife of graves disease #1176530

Hi,

Congratulations! The path to being well and being able to live a normal life again is right around the corner! I’m 8 months post surgery now, and surgery will give your husband is normal life back. It might not be perfect or even 100% “pre- Graves”, but it WILL be MUCH better! I’m about 95% or so my normal self again. My only complaint is I can’t work out as much as I used to. Instead of 2 hours, I can only manage 30 min.! But, hey, if that’s my complaint, I’ll take it! As far as the emotional issues and physical problems, all of those are gone! It did take time after surgery for my body to level out and get normal again- about 4 months I’d say. I had one Synthroid dose increase. About 2 months after that, I started to feel pretty good again. I’m happy for you both.

[adenure]

in reply to: Deciding treatment-leaning towards TT #1176979

Hi!

You sound a lot like me! I have 4 boys (9 years old, 8 years old, 5 years old, and 15 months old). I was diagnosed with Graves after my 4th son was born and was started on 5 mg. of methimazole. I was on it for 7 weeks before I had labs done. It did get my thyroid levels normalized, but unfortunately, I was one of the 1% who had liver issues on it. My liver enzymes were 8 times the normal amount on the 5 mg., so I had to stop the meds. ASAP. Of course, I was freaked out! I didn’t know what to do (whether RAI or surgery). I didn’t want to try PTU bc it has a higher chance of liver issues. I was also breastfeeding my baby (and still am. ). So, RAI wasn’t something I wanted. I didn’t want to be away from my family for a week after RAI or have to stop breastfeeding. I also didn’t want to worry about waiting to conceive. We don’t plan on having any more children, but we are always open to whatever happens.

So, surgery it was! I had surgery 6 weeks after I stopped the methimazole. That was 8 months ago. I’ve been on Synthroid since day 2 after surgery with one dose adjustment 6 weeks into it. I’ve been on that dose since and doing pretty well. I am much healthier now than I was when I hyperthyroid, and when I was on methimazole. Methimazole was good, but I didn’t feel great on it. I might have tried for remission, but having the liver problems pushed me into a decision quickly. I think it was a blessing in disguise. My liver enzymes went back to normal and everything is fine there now.

I have a good amount of energy- enough to homeschool my older 3 children and take care of my baby everyday. I exercise- 30 min. of cardio 4-5 days a week and live a normal life.

I think the choice is up to you. If you want to be “done” with this so to speak, choosing surgery or RAI is the way to go. You’ll still have to be monitored on occasion for your Synthroid dose, but it is not as frequently and much easier to stabilize I think than methimazole. I’m happy with my decision and grateful that I had the surgery. If you do opt for surgery, make sure you have the best surgeon you can find who does A LOT of thyroidectomies. I was very lucky there; I had no complications at all from the surgery. If you have any other questions, feel free to PM me. Good luck!

[adenure]

in reply to: For those of you who have used Cytomel #1176891

I read that elsewhere too- that the Synthroid needs to be reduced when adding Cytomel. The doctor who prescribed the Cytomel is a family practitioner, not an endocrinologist- so maybe that’s why he didn’t reduce the Synthroid- I don’t know. I’m trying to see how the Synthroid on its own goes for me again for awhile. I have an apptmt. with a new endo. in a few weeks I think. Then we’re probably moving to a new state in a few months, so life is a little crazy right now. One lady I talked with is taking Naturethroid and Synthroid as the Cytomel didn’t work for her. Her doctor reduced the Synthroid while adding the Cytomel, but it didn’t work for her too well. Eh. Sometimes I want to throw in the towel with the dosing and meds. tweaking- I guess that’s why I’m just sticking to the 112 mcg. Synthroid for now. Maybe the new endo. will have some good ideas.

[adenure]

in reply to: Vitamin D…Sneaky but it was worth it! #1176914

Whatever works, right? Glad you were able to find out what you needed. Sometimes stuff like that happens for a reason!

[adenure]

in reply to: For those of you who have used Cytomel #1176888

Thanks for the responses. My labs were “normal” about a month ago:

TSH 1.41 0.450-4.500 uIU/mL
Free T3 2.2 2.0-4.4 pg/mL
T4,Free 1.44 0.82-1.77 ng/dL

So, I don’t think my Synthroid needs anything as my free T4 is up there and my TSH is good. With the lower free T3, my doctor was willing to try the Cytomel. I figured it would do the trick and not mess with my free T4 level since that is good. Just frustrated that the good feeling didn’t last more than a week. I didn’t take Cytomel today and probably won’t tomorrow. Maybe I’ll try the 1/8. I thought (because the half life is short) that Cytomel doesn’t build up in the system like Synthroid. So, I figured if I had hyper symptoms it would be within a day of using it. But my doctor said it takes a week to feel adverse effects- for me 2 weeks I guess. I don’t like the hyper symptoms even though they’re not terrible- not as bad as when I was sick. But, still who wants to feel like that?

[adenure]

in reply to: Graves Post Thyroidectomy Armour Thyroid? #1176856

Kimberly,

You said people who stop taking cytomel or Armour experience hyper symptoms. Is that after being on it for awhile? Or did you mean people who “start” taking cytomel/ Armour?

I recently started 1/4 of a pill of 5 mcg. of Cytomel (last week) in addition to my Synthroid (112 mcg). My doctor way okay with the combination because I’ve been on Synthroid alone for 7 months and free T3 labs were low (normal is 2-4 and I was 2.2). I also felt really tired and slightly down mood wise. I have to say that I have noticed a difference. I started out with a really small dose for fear of hyperthyroidism symptoms returning. My doctor told me that if symptoms did return, it would be about a week after starting the meds. Splitting the pill (even with a pill cutter) is a big pain- part of it usually crumbles. I’m thinking of asking the pharmacist to split them for me!

I don’t know- maybe T4 only is fine and probably is for a lot of people. But, when I felt tired and down (and that is not me normally; I’m very energetic and generally a happy, even keeled person), I wondered if I could do anything about it. I’m grateful my doctor is willing to let me try combination therapy.

[adenure]

in reply to: Wife diagnosed today with Graves. Going to see endocrinologist. #1176753

Hi! Congratulations on making a decision and moving forward! That’s a big step. I did not have to stay overnight after surgery, but I think that (in general), most surgeons have the patient stay 24 hours. I went home 4 hours after surgery. I didn’t have a drain put in or anything.

As far as digesting carbs, I’ve never heard of that being a problem. I’m 7 months post surgery, and I eat like I used to. I haven’t gained any weight. I eat healthy and exercise. I splurge on occasion, but I don’t take any drastic measures to maintain my weight.

I take Synthroid (brand) 112mcg for replacement hormone and started 1/4 of a pill of a 5 mcg. Cytomel pill last week (which, I have to say, has made a big difference in my energy level and mood). My free T3 labs were at the very low end of the normal range, so my doctor was fine with me trying a T3 med. along with my Synthroid. Your wife will start out with Synthroid only (most likely) right after surgery and have labs drawn every 6 weeks to see where her levels are at.

After surgery, taking Tums (calcium carbonate) for 3 weeks was advised by my surgeon. Parathyroids regulate calcium levels and they get inflamed after surgery and may not work as well for 3 weeks or so. Mine were not damaged, but I still took the Tums- 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week. It’s a precaution and Tums can’t hurt you. I took Advil for pain (didn’t need the prescription strength pain relief). If you have a great surgeon, things should go well. Good luck! Also, I had a subcuticular stitch- my scar is barely noticeable.

[adenure]

in reply to: Did it! TT done!! :) #1176793

Thank you for your kind works. My mom thinks that “sticking around” the Graves boards isn’t healthy for me, but it is. It helps me stay connected, and also I really want to try and help others who are on this journey- especially those who might be moms or breastfeeding. Being hyperthyroid was the scariest time of my life, and if I can help anyone through it in any way- whether it’s my ATD, surgery, breastfeeding, mom perspective, I hope that I can. I’m glad my words helped you. Makes me happy!!! I’m so glad you’re doing well now.

TraceyAnne, stick around and get the support of everyone here. It’s a really good thing! Maybe start another thread of your own to introduce yourself so others will see your post. Welcome!

[adenure]

in reply to: Did it! TT done!! :) #1176787

I agree with your general assessment on people’s opinions regarding treatment. I very much was one who wanted this to be “done and over with” quickly- or at least as quickly as possible. I knew that with RAI I’d be waiting and probably feeling cruddy while I waited. I also wanted to continue breastfeeding my baby which was a BIG factor for me. Plus, I didn’t want to worry about possibly conceiving too soon post RAI. We don’t have plans to have anymore children, but since we do not believe in birth control from a faith perspective, I felt more confident about the surgery. I also didn’t want to be away from my family for a week or worry about them. Again, I know that a person could be in my exact situation and prefer RAI and weaning her baby and there is nothing wrong with that. That is a good thing about options; each person can do what works for him/ her (with a doctor’s approval). My doctor wasn’t recommending surgery as he felt it was invasive (which it is) and that RAI was a “no brainer”. He did, however, respect my decision and supported me in my choice of surgery as I was a good candidate for it. It isn’t to say that surgery is a walk in the park, but if I had to choose again, I would choose surgery over RAI. ATD’s weren’t an option for me bc of the liver issues. Probably a blessing in disguise I guess- pushing me into what I might have had to do at some point.

[adenure]

in reply to: Started just a little bit of Cytomel #1176796

I’ll let you know! Not sure what it will do. My doctor said if I have an adverse reaction, it should show up around a week into the medicine. Of course, I’m only taking 1/4 of the pill for now. I’ll increase to 1/2 a pill next week if I feel okay. Not about to take a full 5 mcg at once right off the bat. Hyper isn’t exactly a place I want to revisit.

[adenure]

in reply to: Wife diagnosed today with Graves. Going to see endocrinologist. #1176746

Hi!

You’ve had a lot of great responses. I would disagree with RAI being faster than surgery. The other thing to remember is that once your wife has RAI, she has to wait a minimum of 6 months to a year (preferably) to conceive because of the radioactive materials in her body. So, although it might be possible to be balanced hormonally before then, she still shouldn’t conceive right away.

I had surgery and had my hormone levels balanced in 2 months. I was started on 100 mcg of synthroid (which is thyroid hormone replacement) the 2nd day after surgery. I had labs that showed I needed more 6 weeks later. Two weeks after my dose increase, my labs were good and now (7 months post surgery), I’ve been stable on that initial increase (to 112 mcg) and feeling pretty good! So, surgery does not necessarily mean a long process of finding the right dose and being balanced. It can happen fairly quickly. Also, your wife would not have to worry about any radioactive materials in her that would prevent her from conceiving once her thyroid levels were balanced. As a side note though, if your wife does choose surgery or RAI, thyroid replacement hormone has to be increased right away once a woman finds out she’s pregnant. As far as a scar, if you find a great surgeon who does a lot of thyroidectomies, the scar isn’t a big deal.

If I understand correctly, PTU (not methimazole) is considered safe for pregnancy through out all 3 trimesters where methimazole is only safe for the last 2 trimesters. The first trimester is when the baby is forming all his organs and systems, so it is important to avoid methimazole during that time. Now this is REALLY far into the future, but if your wife decides to go the methimazole/ PTU path and conceive, know that breastfeeding is compatible with both drugs.

Good luck to you both and I hope she starts to feel better soon.

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